The weight of death in documentary

What is to be gained from watching someone die of illness? Is there a place within documentary film for showing this natural and inevitable, but profoundly intimate moment in a stranger’s life? Who would want to go to the cinema to watch the human body as it winds down and eventually becomes a corpse? Mama Mia 2 seems like a safer bet.

Island is in UK regional release from 14 September 2018.

While the prospect of watching real death is a hard sell to audience who typically go to the cinema for escapism, there have been numerous precedents. Frederick Wiseman, the storied American chronicler of institutional life profiled doctors, nurses, physicians and patients within a Boston hospital in the six hour doc Near Death (1989). Allan King made a character study of five patients with terminal illnesses in Toronto in Dying at Grace (2003). Wang Bing showed one woman slowly dying at home in a southern Chinese village for Mrs Fang (2017). These three titles capture the process of a body in the grip of illness gradually winding down over months, unlike How To Die in Oregon (2011), which shows patients with terminal illnesses drinking deadly doses of Secanol, and The Bridge (2006), which shows people committing suicide by jumping off the Golden Gate Bridge.

The latest addition to the canon of documentaries that show death through illness (a niche within a niche) is Steven Eastwood’s Island. It is a 90-minute documentary, cut together from one year spent filming four terminally ill patients in and around the Mountbatten Hospice in Newport, Isle of Wight.

Island is decluttered of contextual information. We never learn the diagnoses and prognoses for Alan Hardy, Roy Howard, Mary Chessell and Jamie Gunnell and instead are plunged into observing everyday snippets from their lives in a way that is more episodic that systematic. We hear Alan philosophising about “living in the eternal now” and see the young family that 40-year-old Jamie will leave behind. We see Roy trying to reassure his lover and Mary watching a nature show. The inconsequential moments of normal life take on a moving quality in contrast with the stillness that awaits. The inevitability of death provides a frame for everyday scenes and floods them with lightness.

Showing real death is the antidote for the dominant way it is presented in our culture, which is to say through dramatic fictional representations or tragic newsreel images that show life ending in a way that is usually instant and often violent.

“Removing natural death from public space and discourse leaves only violent death in public sites and conversation,” wrote Vivian Sobchak in her brilliant essay with the sentence-long title: Inscribing Ethical Space: Ten Propositions on Death, Representation, and Documentary. Sobchak goes on to quote Geoffrey Gorer, a social anthropologist whose 1955 article The Pornography of Death still speaks to irrational double standards in prevalent social phobias: “While natural death has become more and more smothered in prudery, violent death has played an ever-growing part in the fantasies offered to mass audiences – detective stories, thrillers, westerns, war stories, spy stories, science fiction, and eventually horror comics.”

The way death is styled on screen in many of the above genres goes something like: one man shoots another man with a gun, the second man falls over. He is now either a dead body, or on the cusp of being one, able to whisper a few words before croaking. Death is not a process, it is an instant. Significance comes not from the act of dying, but the sentiment the narrative ascribes to this event. The fact that death is so ubiquitously presented as something that happens in the blink of an eye simultaneously numbs audiences to the sight of bodies while creating a popular mythology about what it looks like to bear witness to a life ending.

The other place we see death and dying is in news footage. Who could forget the photo that came to symbolise the refugee crisis, the photo of a Turkish police officer carrying the tiny lifeless body of a three-year-old Syrian boy, Alan Kurdi, out of the sea? This images echoes the words of US scholar Lawrence Langer: “Atrocity, with its emphasis on the grotesqueness of abrupt and violent death, intensifies man’s latent apprehension that dying is an unmanageable event.”

The truth is that tragic deaths may capture the public imagination, but they are the exception rather than the norm. Dying of a long illness is the norm rather than the exception, although you would never guess this from the images in circulation.

“Death and end of life needs to go through a similar cultural transformation that birth went through 40 years ago,” says Steven Eastwood. “We have very few images of something that is natural and everyday. The more familiar we are with what happens to our bodies at the end of life, the more we can plan for it, alleviate anxiety and become more reconciled to something that our bodies are designed to do. We are designed to die: this is encoded in us. We don’t need to be quite so afraid of our mortality.”

At present, writing in 2018, there is a knee-jerk revulsion at the prospect of watching real death when it is not a family member or loved one, and sometimes even then. This is tied to ideas that include: death is messy and should take place in private, death is upsetting and we should shield ourselves from it. There is also a projected idea that we are protecting the dignity of the dying by keeping them invisible. (What if a dying person doesn’t want to be invisible?) Dying isn’t dignified, goes the thinking. The terminally ill become as weak as babies, needing help with toilet functions, developing oedemas (tissue filled with fluid) and bed sores. As death draws closer, breathing becomes loud and chesty (‘the death rattle’) and after death the mouth hangs agape.

In short, our efforts during life to present as pretty and put-together are undermined by final evidence of what Sobchak calls our “creatureliness”. We are, in our last moments, unable to cling to illusions and vanity – but why is that a bad thing? Why be repulsed by our animal composition and that of our fellow humans? Do we genuinely believe that pushing death off to cloistered corners helps us to live? Or is the pushing into cloistered corners an irrational phobia – the reaction of someone who fears the unknown and has no desire to confront that fear?

Philippe Aries talk with shudder-inducing sensuality about the perceived indecency of dying in his book Western Attitudes toward Death, comparing mort with le petit mort: “Like the sexual act, death was increasingly thought of as a transgression which tears man from his daily life, from rational society… in order to make him undergo a paroxysm, plunging him into an irrational, violent and beautiful world.” Meanwhile Amos Vogel positions death as too big a challenge to our common delusion: “It attacks our mad scramble for power, our simple rationalism and our unacknowledged, child-like belief in immortality.”

It wasn’t always thus. Until the 16th century the private bedchambers where people lay dying were public spaces. The 16th to 18th centuries saw death becoming eroticised. Only in the 19th century did it take on the hushed taboo status that it occupies today.

Of contemporary attitudes today, Eastwood says: “We are really challenged by these kinds of images where somebody isn’t conscious. We don’t know if it’s okay to see what’s happening to them if we can’t see that they know it’s happening. Do you see what I mean? That’s a big challenge in documentary. Am I allowed to see something that that person doesn’t know is taking place? But we have to think about the opposite of that ethical position, which is: I take that image away from that person. I say that image is not allowed. People with terminal illnesses are generally invisible which implies that image is not allowed. That’s really challenging, because we’re going to be ill at the end of lives and if we can’t be seen and our experiences are not known, I think that’s more ethically shocking.”

There exists no single ethics bible for independent artists seeking to document real people in real settings, although making a film usually means working with organisations (funding bodies, institutional settings) who have their own codes of ethics that extend to collaborators. For Eastwood, Island’s success was dependent on finding a hospice run by people who both shared his belief in the cultural value of increasing visibility around death and were open to having him spending a year inside with cameras rolling. He met with a lot of rejection before finding what he describes as a “perfect partnership” in Mountbatten Hospice. “They’re trying to create a very progressive model for what palliative care is on that little island,” said Eastwood. “They’re trying to roll out a model that includes the community being involved, and having time to anticipate our deaths.”

As to finding subjects willing to donate the last days of their lives to recorded history, Eastwood explains that it was a process rather than a point-blank question. He had nurses acting as fixers who mentioned his project during home visits with outpatients. It was important to receive informed consent at this stage, he says, as once in the hospice people can degenerate fast. At the outpatient stage, still living in the community and talking with nurses, the people consulted were free to show interest or disinterest without having to say no to Eastwood’s face.

Beyond the private understandings reached between filmmaker and collaborators, there are ethical questions knitted into the way such a monumental experience is presented within the art itself. Sobchak lists five possible types of gaze which would allow a documentary to scan as ethical: “accidental”, “helpless”, “endangered”, “interventional” and “humane”. The bill Island fits is “humane”. It is clear from the relationship he has with Alan, Jamie, Roy and Mary that these people are complicit and comfortable with the footage being recorded of them. They show their confidence in the project with, in Sobchak’s terms, “a frequent address to the stare which inscribes the off-screen presence and intimate acceptance of the filmmaker”.

Of course, there is some innate ethical ambiguity inscribed in a film to which it’s impossible to get the sign-off from the people whose private lives are depicted in it. It is impossible for me, as a journalist, to reach out to the four subjects. As Steven says: “None of the people that I worked with saw the finished film because they died.”

“This film is about the experience of dying.”

“Five patients in a palliative care ward for the terminally ill agreed to share their experience in the hope that it would be useful to the living.”

These white words on a black screen are the opening title cards which frame Allan King’s Dying at Grace, posing the question of what we can learn about life from watching people die from a terminal illness.

There are informational teachings: people who die in responsible medical settings are on a cocktail of medication. They receive care, so much care, and much of it is practically focused: changing colostomy bags, making food, monitoring pain – pain relief and management are subjects of obsessive focus. End-of-life care is about making patients as comfortable and carefree as possible. Shining a light on this specialist vocation is valuable insofar as it makes you realise that dying doesn’t have to be tragic. Under supportive circumstances, it can be peaceful.

There are soulful teachings which are difficult to express without sounding corny or pretentious. Here goes…

Whether in real life or in documentary cinema, seeing that time is running out for someone you care about gives their continued existence, moment-by-moment, a sacred quality. You drink in that person. You are as present as you know how. Applying this intensity of attention can – if the person is conscious and not in too much pain – lead to a spiritual communion. Consciousness feels heightened because humans may be creatures, but we are social ones. Emotional connections affirm our sense of belonging to the human race in a way that doomed attempts to avoid each other’s mess does not. This is a rich thing to understand and, if internalised, it can guide us to live with deeper wisdom and heart.

Meanwhile social taboos around death do the opposite of helping us to connect to each other. People who have been marked or shaped by a death bow to the sense that it would be inappropriate for them to discuss what they have experienced.

Steven Eastwood says: “I do hope that this film can be part of a movement around demystifying and destigmatising what happens to us at the end of our lives.”